Most of the women we spoke with had never heard of CIN or CGIN before and would have liked more information about them. After receiving a letter or phone call telling them they had abnormalities, many said they looked for more information on abnormal cervical screening tests (smears) or, if they had been diagnosed at that stage, CIN2 or CIN3. The terms used in the results letter, such as CIN3, severe dyskaryosis or dysplasia, were often confusing.
Some women were anxious that they might have cancer and felt that more information could have helped them to worry less. Several women were sent information with the results letter. Others looked on the internet for more information, and a few spoke to their GP or nurse.
Lizzie found the terms CIN3 and severe dyskaryosis confusing. She wondered whether she had one…
Some of the women we talked to would have liked more information about the colposcopy examination and whether waiting several weeks or months for colposcopy or treatment was harmful.
A doctor explains that women might have to wait up to eight weeks for colposcopy or treatment but…
Information about treatment
Some of the women interviewed were happy with the information they were given by healthcare professionals and didn’t feel the need for any more. Many said they were given information about the treatment they would be having at the colposcopy clinic. Several wondered why some women were treated at the same time as their colposcopy examination while others had treatment at a later date (see ‘LLETZ’).
Genevieve was happy with the information she was given and felt well informed.
Some of the women we spoke to said they were given very little information about treatment and would have liked more spoken and written information. Several said that, although they were given information, they found it too medical and difficult to understand. A few women said they only found out about the treatment they’d had after surgery. One, who was diagnosed over 10 years ago, said she was given very little information and learnt she had CIN3 two years after treatment when she visited her GP. Two women, who were very disappointed in the lack of information they were given, changed to another doctor (see ‘Perceptions and experiences of healthcare’).
Bev and Adam would have liked more information from healthcare professionals but felt they had to…
Gillian received much more information about her treatment after she changed doctors. She would…
Most of the women interviewed were given a local anaesthetic before treatment. Some, though, had to have a general anaesthetic and were worried about the risks.
Colleen had never been in hospital before and was frightened of having a general anaesthetic. She…
A doctor talks about the risks of general anaesthesia.
Some women we spoke to would have liked more information about the do’s and don’ts after surgery and what to expect afterwards (see ‘Healing after a LLETZ or cone biopsy’).
Alaina would have liked to know how much bleeding to expect after surgery and how much physical…
Others would have liked more information on follow-up care. After treatment, they were unsure when their follow-up appointment would be and what it would involve (see ‘Follow-up care’).
Many of the women we interviewed worried about the effects of treatment on fertility and pregnancy and wanted more information about the risks. A few, who were trying to conceive when they were diagnosed, were anxious about how soon after treatment they could start trying for a baby again (see ‘Fertility and pregnancy’).
A doctor explains how treatment for CIN3 or CGIN affects pregnancy and fertility.
Annas main concern at first was having more children. She felt reassured talking to her GP and,…
An important concern for many of the women we talked to was recurrence. Most said they would have liked more information about it and their chances of getting cervical cancer. A few would also have liked information on whether their daughters were now more likely to get CIN3 or cervical cancer.
A doctor talks about recurrence and the risks of getting cervical cancer.
Most of the women interviewed would have liked more information about the causes of CIN3 and CGIN and whether there was anything they could do to prevent a recurrence (see ‘HPV’).
A doctor talks about the causes of CIN3.
Of the women we talked to most looked for more information on the internet. While some found it helpful, others found the information they accessed frightening and contradictory. A lot of the women we interviewed praised the information and support they found on Jo’s Cervical Cancer Trust, a website dedicated to women, their families and friends affected by cervical cancer and cervical abnormalities. Some said they wished they’d been told about it, and other helpful websites, before their colposcopy.
Colleen found a lot of frightening information on the internet and would have liked to have been…
A few women who were diagnosed some time ago said very little information was available at that time. One of these women got most of her information from a book.
Patricia felt isolated when she was diagnosed and frightened by the information she read. She…
Women also said they would have liked more information on cervical screening. Some were unaware that a cervical screening test (smear) could find conditions like CIN and felt that, had they known this, it might have been less of a shock when they were diagnosed with CIN3 (see ‘Views on cervical screening’).